Bone Mets Thread
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Thank you so much for sharing your experiences with bone mets. I'm sorry you are here, but it is comforting to know I'm not the only METAvivor with such diffuse disease. I should explain that I am in a clinical research trial (will be 1 year soon). I visit my Clinical Research Center monthly and have blood drawn, see my ONC, and receive treatment with Xgeva if my blood work is "ok". I take daily exemestane 25 mg orally (Arimidex), weekly study drug (entinostat 5mg mg orally or placebo), and monthly subcutaneous injections of denosumab 120 mg ( Xgeva). I am scanned every third month with CT of chest, abdomen, pelvis with oral and IV contrast to assess for visceral organ spread and a bone scan (nuclear med) to asses for bone met progression. I have the same radiologist/nuc med docs review my scans every month for consistency. They do not believe my bone mets are spreading, its just so darn hard to tell because of the shear number of them. I have viewed the scans and the lesions are all over and very hard to measure accurately - must compare bone scan with CT scan and it is really hard and tedious to do. If I have disease spread in bones, or to other organs I am out of the study. With that out of the way. Side effects: I did absolutely great for about 9 months no real s/e but some easily controlled bone pain, then WHAM! Bizarre stuff which led me and everyone else to believe I sure was getting the study drug but (who knows, really, the study is double-blinded).
I experience, pancytopenia low CBC: white & red cells low, hemoglobin as low as 8.5, HCT low and Platelets all over the place from 65 to 106 never normal range! Had a hospital admission 8 wks ago for what turned out to be "status migrainosus" w/o a headache - all three drugs I take can cause migraines and I was a migraineur when I used to menstruate (I'm 63 and my period is a distant memory). I had intermittent bone pain that was bearable and treated with heat until recently.
However, now I am experiencing bouts of intense pain in lumbosacral thru to coccyx, iliac creasts and SI joints, sometimes around to groin and hips with intense fatigue (can be from the anemia and cancer combined, who knows?). Had MRI's and no nerve impingement yet. Next is repeat xrays. For pain: Opioids, at very low dose (5mg percocet cut in half) make me insanely nauseous, give me weird H/A, and insomnia but help moderately with the bone pain. I take zofran for the nausea. I was offered rads to the area but concerned because of the proximity to the rectal vault (radiation proctitis is a pain in the butt to treat - pun intended). So, rock and hard place because this treatment protocol has rendered NO new disease. Don't want to opt out for another protocol because of this pain that may or may not continue. I really want to continue working but I see patients and can't just keep rescheduling them if I'm in pain and require pain meds. I won't write prescriptions if I'm taking opioid pain meds.
Being a nurse practitioner has been a blessing and curse at the same time. My specialty now is osteoporosis. But at one time or another I was certified in wound, ostomy, continence and pain management! So somedays I know whats going on and others I know just enough to make me scared, and other days I have a million questions.
For those getting Xgeva injections (which is the same drug as Prolia but in double the dose I use for osteoporosis patients) a very slow injection into any subcutaneous tissue should help with the pain/discomfort. Taking tylenol or ibuprofen after the injection should help with the bone pain. My s/e from Xgeva stopped after the third month. I prefer the injection in the fatty part of the back of my arm (there's a large area of fat on my arm to choose from!). Just be sure your nurse uses fatty tissue and not muscle.
Again, thank you all for the welcome back, and the info. I'm feeling much less alone. This is a strange journey, but I hope it's a long journey.
Prayers, peace, love to all. BTW, how do you keep up with everyone? I think I'll just jot down notes as I read then I can comment on posts. Again, each and everyone of you has been a blessing to me. Your courage & strength is contagious and your knowledge and sharing eases my fears. Please forgive this rambling post.
Beth, (rnsparki)
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Good morning all. Just a quick pop in to give my two cents. I get my Xgevashot in my tummy the last 1 1/2 years. My left "good" arm has had enough abuse in 18 years. Absolutely no problem or pain. Just drink at least 8 glasses of water before and after. Wishing you the best. Myra.
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Deanna, nice to see you enjoyed some antiquing and some garden planting purchases, too. Thank you for the advice regarding Levo and Arimidex. Have you received my PM? Valerie
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Kendrasue, it was me, you were right. I always get xgeva in the belly but as others pointed out it needs to be injected slowly. I never have any pain, and only on occasion felt a little prick of the needle but mostly zero sensation. If you have belly fat, I'd give it a try, if you struggle to pinch any fat together, I guess I'd go with the arm. Good luck -
I get my next shot on Wednesday, but that's not my worry - I have a PET/CT Wednesday also and nurses, no matter how experienced, struggle with finding a good vein for IV's. I will leave looking like an assault and battery victim, I'm sure.
Amy
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Beth, your professional specialties (bone and pain!!!) and the research trial you are in both are very impressive! It obviously is the drug that gave you all the sensations, for our diffuse mets are rather quiet, blood work are also rather eventless. Glad you are back to the board. You will be a great assess for us. Hope you will hang in there with your research trial treatment, and hope the trial succeed in providing us a new powerful drug! As for how to address every and each one individually by names, I think we should accept that since we have so many new women, we should not feel ignored if some names are not mentioned by someone. I think we have started a new practice. That is, names are for substantial and specific concerns and questions / answers. By dropping names fro general good wishes and warm regards, this thread is felt more open and inclusive to all.
All, happy Monday!
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Is the top of shoulder an odd area to get mets? When I was dx three months ago they were in lower part of my body - hips, ribs , spine. I'm on faslodex and zometa, but have been experiencing soreness where bra strap is on left side only. I do have a pet scheduled, but this is freaking me out. I'm not handling this dx well. Rachel
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Beth - a warm welcome to you. Keeping up with this thread is not easy indeed! I don't work so have the time and even then, it's not always easy. Nice to have you join us. I lurked a long time before contributing to the threads. I have bone mets in femur, pubic bone (with pathological fracture), iliac, sacrum, rib and now possibly in spine (cervical and thoracic areas). I will never understand the mystery of pain with bone mets. Sometimes, it hurts so much, especially pubic and femur (those are very large mets and rod insertion in femur in April 2014), that I was convinced there was progression. But every test showed stable there so far. I have a small met on rib, so small that I could not believe the pain it caused. Sometimes I understand, if I move the wrong way, overdo it or weather also has an imact on my mets. And sometimes, they just decide to wake up for no reason. All my mets started out as lytic, but now some are a mix of sclerotic and lytic. The new lesions I have in neck and thoracic region are lytic/blastic, they show up on CT scan but not on bone scan. I have no PET scans. My Onc once told me that the slcerotic transformation (for lack of a better word) could be bone remodeling due to tx and pamidronate infusions (currently on monthly Aredia since Dec 2013) and scarring tissue from rads. I had rads to pubic bone, femur after surgery, iliac and sacrum. I hope you can stay on that clinical trial, and it's not a question of putting on your big girl's panties! Not for me anyway! What is the name of the clinical trial you are on? Wishing you the very best. You have such good advice! Thank you.
Annie - are you still feeling better? certainly hope so.
Myra - I'll bet you can't wait to see your precious Mallory. Agree, flying is much better.
Gaia - a bone scan would be redundant if you've had PETs. Praying you have good results with your MRI.
Mommal - Still thinking of you and Dani as she begins new tx this week. Praying it stops the beast in its tracks.
Amy - praying for good results! Those damn veins...
Deanna - Woohoo, it must feel good to get back to some kind of normal. Keep well.
Ever since my messed up infusion of 2 Sept, I have new things popping up. Yesterday was a nice sort of cool day so I figured I would do some overdue cleaning on the pontoon. All of a sudden, I felt so nauseous, started shaking and had pins and needles in hands and legs. I was apparently white as a ghost. This morning, I ran one errand and got dizzy. I'm waiting for my pharmacy to give me some feedback as to whether the infusion could be the cause. They are doing some research. My nurse is supposed to call me this week, I will let her know.
Wishing you all a good week filled with little joys and less pain. Hugs all around.
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I started zometa and flasidex friday...waiting on approval on Ibrance...
We found out last week that my youngest dd who is 13 and has multiple brain tumors needs treatment too due to significant growth, not sure how we are going to do this...her Dr's are 2 hours away, we are trying hard to get into a 1 story house as she is legally blind dizzy all the time and unsteady and with my bones issues now...feel completely and utterly overwelmed....
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Keetmom, I don't know what to say. I will pray for your dd, you, and your family. I understand how overwhelmed you must feel, and I wish there was something I could do to help. It all seems like too much to bear. Please remember that we are here for you when you need us.
Lynne
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Keetmom I am so sorry to hear that you have a much more complicated and overwhelming puzzle to face. Thinking of you and wondering if you need support in mapping things out on paper- or somewhere physical so that all of the logistics on top of the emotions don't tow you under.
any encouragement you might need!
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No wonder you're feeling totally overwhelmed, keetsmom. Please let us know if there's anything we can do to help you in addition to praying for you and your family. (((Hugs))) and prayers that a move to a one story house will go quickly and smoothly. Deanna
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keedmom, do you know American Cancer Society has a lodging program providing cancer patients and their caregivers with free over night stay at co-op hotels for doctor visits and treatments? This is the link http//www.cancer.org/treatment/supportprogramsservices/p...
I am very sorry for what you are facing. Hope you have successful treatment and are able to manage your daughter's treatment. You are in my thoughts. Let us know how we can help.
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Rachel1
I've had pain there as well for the last few months. Since I don't wear a bra any longer but I do wear a compression garment for LE, I pull my straps down at night so I don't get the pulling sensation on the top of my shoulder. I ought to have the results of my next scan by Friday so hopefully the pain is nothing but just pain and not cancer.
Keetmom, I am so sorry to hear of your dd and her tumors. As a parent I just know you'd rather trade places with her. I believe in the power of prayer so will be praying for her and you.
Amy
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Keetmom, I am so very sorry that you are going through so much right now! My prayers will be with you and your family, especially your daughter. We are supporti you here in spirit.
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Hello to all,
Linda, my feeling better was short lived. Struggling with same issues so put a call into the cancer centre today. The nurse called back and my MO said to double up on the stomach meds to see if it helps, looking like the Celebrex may be taking a toll on my stomach. I stopped it yesterday and haven't taken any today to see if I notice an improvement. So far today not too bad but I was still pretty sick this morning. I'm worried I might have an ulcer, we shall see.
rnsparki, so glad you decided to stop lurking. Wishing you the best with your clinical trial. Being a nurse practicioner I'm sure you are very knowledgeable and would be an asset to many of us here.
keetmom, I'm so sorry you are going through so much, bad enough you have your own health issues but worrying and dealing with a child's illness is overwhelming. If there is anyway we can help, please let us know. Sending prayers and healing hugs your way.
To all the beautiful women here who I can't personally address right now know I'm thinking of you all!
Hugs to all, Annie
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Keetmom, I'm sure you have been given this cancer connect link from UW, but just in case here it is. I was able to get a reduced hotel rate at the Best Western (remodeled last year) right down the street, on Highland Ave. from the hospital. Also, cancer connect will help with driving you or your family to the center for treatments. I wish I lived a little closer to help you with the drives. My family also had very good help from UW Health American Family Children's Hospital.
There are also psychologists right at the Carbone center if you feel like you could use someone to talk to, and who also know the ropes at UW.
Dr. Toby Campbell is chief of Palliative care and is a wonderfully compassionate man who also can help guide you. He can be reached at 608-821-4819. He has a medical degree in oncology and palliative care. I can't say enough about him. Sorry if all of this has already been given to you. If not, perhaps some of this information will help you and your family. We are all here for you.
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Thank you all for your kind words, She has 9 total brain tumors, most are stable this one is growing quickly. .hopefully most of her chemo this time is oral, and we can do labs close to home. She has done 5 other protocols, never thought we would still have her at this point.. (she also is a below the knee amputee due to the genetic disorder that has caused all of the brain tumors)
Linda when down there for Emma we can stay at Ronald McDonald House...10 a night and they feed us!
I just need all of us started on treatment and be settled in a new place, family is working on planning fundraising to get us moved, which also is tough because we have been fighting her brain tumors 8 years and it is really hard to accept that we can't do this on our own. I have control issues so letting others take care of things is hard.
Amie
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I'm anxious about MRI tomorrow of lumbar area due to increased pain in low back and left hip. I also have a lot of muscle spasms and sharp burning pain in left hip. Just tired of being doped up all the time to get thru the day. Marilyn
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Marilyn, praying your MRI comes back clear. Sometimes the meds we take to keep the cancer at bay cause us pain. Have you been on Aromasin only since your diagnosis of mets? I am on letrozole and it has caused me pain in areas I never had before. I take Celebrex to try and counteract the arthritis letrozole is causing and now it is giving me stomach problems. I can totally understand you being tired of being doped up. Sending positive thoughts and healing energy your way. Please let us know how you make out.
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Keetmom--wow...speechless. Praying that you find peace in letting others help. I'm overwhelmed just trying to wrap my head around your family's situation. Lots of prayers and hugs
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Amie, I so admire. your strength. I often think of our emtional life. like muscles in our body. You have built up many muscles that no doubt. have served you well, but the letting go muscle and accepting help muscles dont get exercised often. Most. likely because your are a strong woman and a. nuturing. mother. I am sending your family thoughts of peace.
Annie and Marilyn and others dealing with pain I am right there with you. This week I am working on letting the pain meds work for me and taking small doses three times a day. This dose help me live life with less crankiness and tears. I am working on the assumption that it is SE not progression. because scans have been good this spring and summer.
Have a good week all
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Wow Amie, I'm also hoping you'll let others help. I know how hard it is (I'm a control freak too), but I also know from the times I have been allowed to help someone that giving my time, money, etc., actually probably helps me more than it helps them. People desperately want to help and this gives them a way to do it and it's win-win - you get the help you need and they get to feel good about themselves! One of the best moments I've had in my life was helping two young women (19 year old twins) with cerebrial palsy get their first apartment! That was 12 years ago and it still makes me feel good. So, look at it as doing something nice for others by letting them do something nice for you.
Wishing you good luck with the MRI Marilyn. I also have pain in odd places and it's all from side effects.
Annie - sorry you're having such a tough time with Celebrex. I went to the GP today because I have chronic nausea and the trots, so we're trying to figure it out. However, we're on roof water (from a tank) and think that may be the issue since my husband doesn't take Celebrex and has the same problems. I take Omeprazole twice a day. And Celebrex is much easier on my tummy that another arthritis med I was on. But as we know, everyone is different.
3-16: Glad you have the pain meds sorted out. Living with chronic pain makes me cranky too.
Hugs to all,
Terre
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Marilyn- Good luck with the lumbar MRI and hope that you find it it is the meds causing you have pain.
My dh's MRI came back zero which is what it should show after prostate cancer surgery. We'll take it.
I got my shingles injection last week and got a mild case of shingles. Mostly fever, blisters on my arm and side, but not many and not much pain with it, mostly itching. MO said he sees cancer patients that get shingles all the time from the shot, due to our weakened immune system. We are a lucky group!
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Keetmom - I'm at a loss for words - my heartfelt prayers for you. Accept all the help offered and ask if you need to. And we're here for you.
Annie - Damn for short lived. Hope you get answers quickly.
Terre - I would trade my constipation for your trots LOL. Feel better soon (and hubby).
Lindalou - Woohoo good news for your hubby! I guess I was lucky, no reaction whatsoever after shingles vaccine in August.
Dune - how are you?
Hugs all around.
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Hugs to everyone.
Keetmom, I don't know what to say. You and your family are in my thoughts and prayers. I agree with the others, let people help you. It's good for everyone. Praying for strength and peace for you and your family.
Annie and LindaE I hope you both feel better soon.
Lindalou-ugh, sorry about shingles. Yes, we cancer girls have all the fun, don't we?
Still dealing w pain but managing. Having some issues w hubby accepting help. I tend to be a talker about everything and he resents the invasion of his privacy. But when I'm not feeling well and I want company not sure how to avoid having them come to our house? I am just so exhausted and need some purely positive support, which really I get from you guys but I need an in person hug too!
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Great news for hubby Lindalou. bugger @ shingles however.
Cjanet - I have the same problem to an extent. Is there any chance you could have one of your friends pick you up and you could go out for a coffee? Or they could take you to their place? I'm mobile enough that I go out for coffee and don't generally bring people to the house. My husband is in such a lovely state of denial that he just doesn't want to hear about it. And he thinks it's "a private matter". At any rate, hope you find a solution because yeah, we do need hugs in real life.
LindaE - trade you for a few days at least.
I was back to the doc yesterday and have to turn in samples and get blood tests done this morning. This tummy issue is undoubtedly better to have the constipation; however, I can't be far from a loo at any time. Makes the 70 minute train ride into town a challenge (no potties on the train). Oh well, hopefully they'll figure it out. Annie - hope they figure your problem out soon too!
Sending hugs to all,
Terre
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wishing there was a happy medium between the green apple quick step and the long road to Brownsville for the both of you! Miserable either way! Has anyone heard from Wendy this week? Or Dune sleeper? I may not post often, but I never forget to worry. Healing hugs all across the globe to all of you
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Chelle - too funny. Long road to brownsville and green apple quick step. thanks for the giggle.
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Hello everyone,
I spent this most gorgeous day outdoors with my eldest daughter. Probably the first day I've felt reasonably well enough to do so in a week and a half.
3-16-2011, glad you found the right combination of meds to help make life less tearful, it's such a balancing act.
Terre, damn the Celebrex is not being friendly to me, I've been off of it for 3 days now but I'm suppose to restart it tomorrow with double the stomach meds. Strange it took this long to affect me, I thought I was doing so well. Really noticing the pain increase since I haven't taken it. Hope your tummy issue gets sorted out quickly.
Linda, I guess I'll have some answers when I try to take the Celebrex again tomorrow, fingers crossed that doubling up on the stomach meds helps.
ChelleG, lol at your post, either way it's a crappy situation. Unfortunately for me today it was the green apple quick step after every meal.
Cjanet, thanks for the well wishes. Hope you get the positive support you need, sending you big hugs.
Hugs to all of you, Annie
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Terre, I hope they find the cause and solution to your problem. What a misery! I have Linda's problem, and that's bad too; but there are ways of coping. At chemo today I told my nurse coordinator of a few things going on, one of which is pain in my upper belly when I bend over. She asked if it felt like bloating. Nope. Feels hard. She said what I suspected. "You're full of sh*t." lol So, I've added hot prune juice to my arsenal.
I had a rough week last week, so I got behind. Almost caught up now, though.
Had a weird thing happen last night. Over night a discoloration appeared on my finger, and it got darker through the day. It's not raised, doesn't hurt, and doesn't wash off. It got the nurse coordinator's attention too. I guess I'm going to have to get another appointment with the dermatologist. If it ain't one thing it is another. Watchagonnado?!?!?
There was no brown spot last night. This morning it was discolored. Now it looks like brown wood stain. Crazy!!!
I need to finish and put Dusty and Soebe and especially ME to bed. I got the down out for tonight. Nice.
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